It’s a clear December Wednesday afternoon outside at USFSP (or are there clouds? The sun is shining, at any rate). I reach the rec room at Davis Hall looking for Ali, asking around while students unwind playing pool or chatting idly. No one knows who I’m talking about, and it makes me anxious. I sound foolish with my stuttering and stammering, as I often do when I talk to people. No one is rude or snotty, but it doesn’t stop me from feeling the way I do. I’m new at this school, and this is the first interview I’ve ever done. Thankfully, Ali and I had exchanged cell phone numbers the night before over Facebook after she had responded to my post on the page “USFSP The Know It All’s Guide to Knowing It All!” I am sure to wear something that sticks out—a pink striped polo shirt—so she can easily spot me when she walks into the room. She herself is easy to spot in her big pink hoodie and glasses in a room where most have on T-shirts. We smile and exchange introductions, then find a spot in the corner away from the action to talk. Unlike our online exchange, there is stammering and long awkward pauses (mostly on my part), but there is still an easy understanding between us. As I ask my questions and she tells me her story, someone starts to play an unfamiliar tune on the piano in the background.
So it goes for many like Ali and me.
When I went to see Mr. McDowell from Student Disability Services, to have my accommodation plan organized before I would start classes in the spring, he said that many students here at USFSP are on the autism spectrum. The Center for Disease Control has estimated that about 1 out of every 166 children in the United States are on the spectrum, which includes autism, Asperger’s Syndrome—what I have—and Pervasive Developmental Disorder, which is what Ali has; it was estimated in 2002 alone that there were between 284,000 and 486,000 people under twenty years old and diagnosed with pervasive developmental disorder. That’s a lot of kids looking at college. Sadly, I could not seek out all of them to write this story. As with anything, some have more challenges than others; a cousin of mine, for instance, is in his thirties and has both profound autism and Down’s Syndrome, so he can’t go to school or get a job. For the many of us who are able to go to college, our experiences may differ from those who aren’t on the spectrum, for better or worse.
Ali Karikas was first diagnosed at five years old, then again a few months prior to our interview. “It takes longer for me to do homework assignments, especially when it’s on math, for instance,” she says. “On tests, I often don’t understand the written directions, right away, so it takes longer to do tests, too.” However, she says that her condition affects her social life more than her academics. “I’m not a real outgoing person,” she admits. “It’s hard for me to meet new people, or have a normal conversation. Sometimes I’m not really sure what to say, and I don’t get social cues. Like, for example, if someone wants me to go away, to leave, I don’t quite get the hint.”
I get where she’s coming from all too well. I express myself better through writing than speaking, hence the awesome term papers but less-than-stellar oral presentations. Animals and computers seem safer to me than people. I don’t like wearing jewelry or makeup; they feel funny on my skin. I say things without thinking about it. It was only last July that I was diagnosed with Asperger’s, after a grueling semester that made me withdraw from nursing school altogether, despite my grades. I wasn’t getting along with my peers, and my interactions with floor nurses, patients and family were frequently wrought with misunderstandings. By the time I left, I’d had at least six write-ups to my name, one of which had me banned from the hospital I was doing my clinical rounds at, as hard as I tried to explain my side of the story. Before then, I was bullied a lot in school, which prompted my parents to pull me out after sixth grade and complete the rest of my grade school education at home. Before I was diagnosed, I would have many tell me that it was my fault I couldn’t get along with others, including my own teachers and guidance counselor. According to my mother, my old assistant principal had even gone so far as to tell her that I was “a sociopath.” (Then again, I wasn’t there to hear that, and my mother does have a tendency to exaggerate, so I would take this with a grain of salt.) I’ve been told that I should be more like others. Dress up, put on makeup, chat.
Believe me, I’ve tried. Ali has tried, and we still do, every day. We are not that different from other people, except that our brains are wired a little differently. We’re like Linux computers in a world running on Windows or Mac. We have our likes and dislikes, our weaknesses and our strengths. While it’s a myth that all autistic people are specialized geniuses like the Rain Man, we’re not stupid, and we’re not psychopaths. In fact, some of the most compassionate and politically active people out there are autistic, like Temple Grandin and Jim Sinclair. Maybe it’s a misnomer to call autism a disease or condition? “Disease” implies that it’s caused by a germ and it needs to be cured, like leprosy. That sort of terminology is isolating, and stigmatizing. Autism may be more of a philosophy in itself, a different lens through which to look at life.
Ali is a sophomore student going to USFSP, “flip-flopping” between the majors of Education and Mass Communication. “I chose those majors because I want a job where I can help people. I’m also into theater, mostly doing background scenes, and you need both to pull it off. Problem is, there isn’t much money to be made in drama by itself.” She has undergone vocational therapy and has been focused on looking for a job. Before she came to USF, she was working on her General Education requirements at St. Petersburg College, a school that I have also transferred from. “When I was younger, my family used to go to a lot of the USF games, and my dad told me, ‘You should go here, it seems like a great school,’” says Ali. “I wanted to go to university, and USF is close to home. The campus is nice, it’s by the water, and I’ve heard a lot of good things about the teachers and students.” While she finds USF to be more challenging academically than SPC, she likes that USF offers more social opportunities. “At SPC, it was generally like, just going from class to class, but here, they have all these clubs you can join, and special events on campus. It’s just easier to meet people than it was at SPC.”
I myself am a junior at USFSP seeking a Bachelor’s in Biology. Once I have that, I plan to go to the Tampa campus to get my Doctorate in Clinical Research. I too want to lend people a hand, through medicine. I was introduced to USF through my brother, who also goes to school here and is in Student Government. Like Ali, my own father suggested that I come here, and my mother helped me through the paperwork.
Like me, Ali cites her family as an important source of support, “especially my dad, who’s always taught me to be a better person.” For me, it is my mom and her knowledge of what my condition was before I could have it formally diagnosed (she was not exaggerating about this one). She fought for my case when I was in nursing school, and is always there when I need an ear and a hand. I’m not sure where I would be if I didn’t have her and the rest of my family. Like everyone else, we as college students seek fulfillment, our niche. We don’t ask for slack or special treatment. We need only understanding and encouragement.
Sources:
http://link.springer.com/article/10.1007%2Fs10803-007-0524-8?LI=true#page-1
http://www.child-autism-parent-cafe.com/famous-people-with-autism.html
http://tvtropes.org/pmwiki/pmwiki.php/UsefulNotes/AspergerSyndrome?from=Main.AspergerSyndrome
Photo found here: http://www.specialeducationadvisor.com/dear-kids-with-autism-prompt-dependency-is-not-your-fault/
CARD (Center for Autism and Related Disabilities) just had their annual conference on Jan 11-13, 2013, at the Trade Winds Resort in St. Petersburg in celebration of their 20th anniversary: 20 years of assisting children and adults on the spectrum and their families. Their website: http://card-usf.fmhi.usf.edu/